transfer of adolescents with congenital heart disease from pediatric cardiology to adult health...
TRANSCRIPT
Transfer of adolescents with congenital heart disease from
pediatric cardiology to adult health care:
An analysis of transfer destinations.
E. Goossens, I. Stefani, D. Hilderson, M. Gewillig, W. Budts, K. Van Deyk, P. Moons
on behalf of the SWITCH2 investigators
Background International guidelines emphasize the need for life-long cardiac
follow-up by specialized practitioners in patients with congenital heart disease (CHD)
(Warnes CA, J Am Coll Cardiol, 2005)
Adolescents reaching adulthood should have uninterrupted transfer to adult-focused facilities to avoid discontinuity of care
(Knauth A, Cardiol Clin, 2006)
2
Background: 3 levels of adult CHD care
Deanfield J, Eur Heart J, 2003
• Adult CHD program• Pediatric CHD program• Satellite center =specialized cardiologist at regional center
• General adult cardiologist with report to tertiary center
• General or community cardiologist or general practitioner without report to tertiary care center
Background
Published studies demonstrated that 21 to 76% of young adults with CHD discontinued follow-up after leaving pediatric cardiology
Author, Year Country Population Proportion
Reid, 2004 Canada Complex heart defects 53%
Wacker, 2005 Germany Total population of CHD 76%
De Bono, 2005 UK Repaired coarctation of the aorta 39%
Yeung, 2008 USA Moderate and complex heart defects 63%
Mackie, 2009 Canada Complex heart defects 21%
Goossens et al., 2011
Aim of the study
1. To investigate the destinations of transfer when patients are (assumed to) leaving pediatric cardiology
2. To determine the proportion of patients with no follow-up and with no appropriate follow-up
3. To explore the determinants of no follow-up and no appropriate follow-up
J Am Coll Cardiol 2011;57:2368-74
Methods
Design: Descriptive, observational, cross-sectional study at a tertiary care
center, University Hospitals Leuven, Belgium Setting:
Pediatric and adult CHD program are located in one hospital Both programs share a database for clinical follow-up of patients According to a standardized protocol patients are transferred
to ACHD at the age of 16 years, if medical condition is stable No formal transition program that prepares adolescents for the
transfer Sample: ° 1984-1988
planned to leave pediatric cardiology between 16 years adult care setting 2000-2004
J Am Coll Cardiol 2011;57:2368-74
Methods
Data collection:
n = 794
Transfer destinations were retrospectively derived for 676
patients from database for pediatric cardiology and ACHD of University
Hospitals Leuven, Belgium
118 patients were approached by a brief questionnaire or contacted by telephone asking additional information about the setting of
cardiac follow-up
n = 813
19 moved abroad, excluded from data-analysis
J Am Coll Cardiol 2011;57:2368-74
Results: Sample characteristics Sex: 53% 47%
Top 5 : primary CHD diagnosis of selected cohort
Medical history:- 37.9% of included patients underwent no intervention or surgery- 7.6% underwent only a catheter intervention- 47.7% underwent only a surgical intervention- 6.8% of patients underwent both catheter and surgical intervention
Type of CHD Absolute number (n) Percentage (%)
1. VSD 118 14.9
2. Aortic valve abnormality 106 13.4
3. Pulmonary valve abnormality 94 11.8
4. Coarctation of the aorta 90 11.3
5. Tetralogy of Fallot 72 9.1
J Am Coll Cardiol 2011;57:2368-74
Results: Sample characteristics
9.3%
56.4%
34.3%
Complexity of heart defect according to Task Force 1 32nd Bethesda Conference
mild
complex
moderate
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Results: Transfer destinations
J Am Coll Cardiol 2011;57:2368-74
Results: Appropriate setting of follow-upin need for specialist care
Patients who did not receive the minimum level of care
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Results: Appropriate setting of follow-up in need for specialist or shared care
Patients who did not receive the minimum level of care
J Am Coll Cardiol 2011;57:2368-74
Results: Appropriate setting of follow-up non-specialist care is sufficient
Patients who did not receive the minimum level of care
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Results: Factors associated with no follow-up and no appropriate follow-up
Patient characteristics OR [95%CI]
Male sex 1.80 [1.02-3.17]
No prior heart surgery 5.97 [3.04-11.72]
No follow-up
No appropriate follow-upPatient characteristics OR [95%CI]
Male sex 1.63 [1-2.63]
No prior heart surgery 3.30 [1.88-5.77]
Greater complexity of CHD 1.61 [1.04-2.49]
J Am Coll Cardiol 2011;57:2368-74
Discussion
Results are substantially better than in other Western countries, but:Belgium is a small country with a high population
densityGood access to specialized careOur tertiary care center has a pediatric and ACHD
program at one locationGood collaboration with regional cardiologists
Limitations of this study:- Patients were selected from a database of one
tertiary care center, so results are not generalizable- Inconsistencies between American, European
guidelines and expert opinionsJ Am Coll Cardiol 2011;57:2368-74
Conclusions
7.3 % of patients are no longer in follow-up after leaving pediatric cardiology
86.1% is under surveillance of specialized follow-up
According to international guidelines, 10.2% (n=81) does not receive follow-up at the most appropriate setting
Development and implementation of a structured transition program can facilitate patients seeking appropriate specialized follow-up
J Am Coll Cardiol 2011;57:2368-74